New Push For Early Testing, Treatment for Dementia

Efforts are growing to overcome the stigma of dementia, screen patients for risk and follow up with diagnostic tests and early treatment. Dr. Malaz Boustani and WSJ's Laura Landro discuss on Lunch Break. Photo: AP.

A new push is under way to improve screening and follow-up care for patients with dementia, the devastating loss of brain function that impairs memory, thinking, language, judgment and behavior.

With no cure and little in the way of treatment, experts have long debated the value of screening for the condition. But newer research suggests that the benefits of routine dementia testing in older patients may outweigh any potential harms. Identifying the problem at a milder level of impairment—and enacting a care regimen—may stave off a crisis that can disrupt patients' lives, prevent them from putting their affairs in order and levy extreme burdens on caregivers.

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Under the new U.S. health law, Medicare will cover an annual wellness visit that includes detection of "cognitive impairment," or a measurable change in thinking abilities—especially memory—that signal a dementia risk. Once diagnosed, patients can be helped with family support, medication management and brain games to help delay further declines.

The U.S. Preventive Services Task Force, a government advisory body, is currently reviewing its 2003 guidance that there is insufficient evidence to recommend for or against routine dementia screening in older adults.

Rather than one disease, dementia refers to a group of symptoms severe enough to interfere with daily life. Most commonly caused by Alzheimer's disease, which affects 5.4 million people in the U.S., it is also linked to other age-related problems such as stroke or Parkinson's disease. According to the Alzheimer's Association, the annual incidence of all dementias is expected to double by 2050 as the population of older adults expands.

Yet studies show that up to 81% of patients who meet the criteria for dementia have never received a diagnosis. A 2009 review of research on missed and delayed diagnosis of dementia, led by researchers at Baylor College of Medicine, found that doctors may not focus on memory issues while treating older patients with other health concerns. They may even knowingly withhold a diagnosis of dementia to avoid burdening patients.

ENLARGE

TEAM BETTY: Soon after her family began noticing signs of cognitive decline, Betty Crowe, left, of Indianapolis, received help managing her dementia symptoms from her three children (above) and a cadre of doctors, therapists and care-management experts.
A. J. Mast for The Wall Street Journal

The Alzheimer's Association recently published recommendations to help doctors assess cognitive impairment during checkups. These include asking patients and caregivers about whether confusion and memory loss are worsening and using widely available cognitive screening tests that take less than five minutes. Doctors can use the results to determine whether patients need a more complete evaluation.

Studies also show that continuing, individually tailored care-management programs can improve quality of life for both dementia patients and their caregivers. One model gaining attention, which takes a team approach to care management, is the Healthy Aging Brain program, developed at Indiana University Center for Aging Research, in conjunction with the nonprofit research organization Regenstrief Institute. A pilot program at two university-affiliated health systems reduced emergency-room visits by 45% and hospitalizations by 54% for dementia patients receiving a year of care management, compared with those not in the group.

In 2008, following the pilot, Wishard Health Services, affiliated with Indiana University, opened the Healthy Aging Brain Center, where patients can receive a full diagnostic work-up, including neurological exams and brain scans. If dementia is confirmed, the center's nurse practitioners, social workers and care managers work closely with family caregivers and primary-care physicians to customize care plans, reviewing medications to reduce the use of drugs that can be harmful to older brains. They also use aging-brain software to collect data on symptoms, track the stress level of family members and monitor how well patients' goals and needs are being met.

With a grant from the Centers for Medicare and Medicaid Services last year, a team led by Indiana University and Regenstrief's researcher Malaz Boustani expanded the program to about 2,000 patients at 11 facilities operated by Wishard. Dr. Boustani, who is also associate director of the Healthy Aging Brain Center, says he is working with health-care systems in other states to duplicate the program, with an aim to affordably scale up the model to a national level.

"The care for dementia patients right now in this country is suboptimal," says Dr. Boustani. "This model puts less emotional and financial burden on the individual, family members and the system paying for health care."

But simply screening for dementia isn't enough, Dr. Boustani cautions. At least 20% of those who screen positive on questionnaires may have normal cognition, which would only be apparent with more testing. And for those who do have dementia, counseling and care management are necessary to prevent anxiety and depression and keep patients healthy.

One big hurdle to success, says Dr. Boustani, is getting patients and families to overcome some of the stigma and fear associated with dementia. Families may be in denial or assume that memory problems are just a normal part of aging, while patients may be terrified of losing their ability to live independently. But his studies show the majority of older adults are willing to undergo screening when offered the chance.

Betty Crowe's three adult children began noticing in late 2010 that their mother, now 81, was having problems with short-term memory and often repeated herself. The former teacher and counselor from Indianapolis has her own apartment in an independent living facility, and says she didn't think she had a problem, but agreed to see Dr. Boustani in May 2011 after a family friend suggested the Healthy Aging Brain Center. After a comprehensive assessment—including interviews with her and her family, neurological and psychological tests, a brain scan and blood tests—she was diagnosed with mild cognitive impairment due to the earliest form of Alzheimer's. A plan was made to re-evaluate her in a year.

To reduce the risk of the disease accelerating, the recommendations included 60 minutes of brain exercises daily, 15 minutes of moderate-intensity physical exercise and avoidance of medications that might worsen the condition. In May 2012, she returned, and after more tests and interviews, was diagnosed with Alzheimer's and enrolled in the center's home-based program to help manage her symptoms and provide support for her family.

Her children visit often, stay in touch with the medical team and divvy up responsibilities: Larry Crowe, an Indianapolis police officer, gets her to doctor's appointments, while Lloyd Crowe, a deputy police chief, works on her finances. Their sister Linda Crowe-Knight, a receptionist, keeps track of medications.

Ms. Crowe receives regular home visits from occupational and physical therapists, who work with her on puzzles, problem-solving games and exercise, including walking, stretching, leg exercises and light weights. Lloyd Crowe says his mother also dances around the apartment "whenever the mood strikes her."

Dr. Boustani told the family that Ms. Crowe is still in the "green" zone, meaning she could still manage many activities of daily life, and Larry Crowe says their goal "is to keep her there as long as possible." For her part, Ms. Crowe says she still thinks she is fine without help and is upset she can't drive her car anymore. "The one thing I'd like to have is my independence, and I still haven't come to grips with that," she says.

But she is happy to be living in her own home and appreciates the program. And, she adds, she is doing much better than some of her peers who have the same diagnosis.

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